Posted on
Sunday 16 June 2013

Allen Frances, professor of child psychiatry at Duke University and chair of the DSM IV [Diagnostic and Statistical Manual of Mental Disorders] task force hit the nail on the head in a recent commentary "Why So Many Epidemics of Childhood Mental Disorders?" in the Journal of Developmental and Behavioral Pediatrics. Because he makes his argument so clearly and persuasively [and the full article is only available to those who subscribe to the journal] I will quote it at length.

Since the publication of DSM-IV in 1994, the rates of 3 mental disorders have skyrocketed: attention deficit disorder [ADD] tripled, autism increased by 20-fold, and childhood bipolar disorder by 40-fold. It is no accident that diagnostic inflation has focused on the mental disorders of children and teenagers. These are inherently difficult to diagnose accurately because youngsters have a short track record; are in developmental flux that makes presentations transient and unstable; are sensitive to family, peer, and school stresses; and may be using drugs. If ever diagnosis should be conservative, it should be in kids. Instead, we have experienced an unprecedented diagnostic exuberance encouraged in part by DSM-IV, but mostly stimulated by the powerful external forces of drug company marketing and the close coupling of school services to a diagnosis of mental disorder.

He gives the example of ADHD, describing how the revisions to DSM IV had anticipated a jump in diagnoses in girls with the additon of an "inattentive" subtype. But in fact there was an unexpected tripling of ADHD rates and parallel increase in use of psychiatric medication. He writes:

Three years after DSM-IV was published, drug companies introduced new and expensive on-patent drugs that provided the incentive and resources for an aggressive marketing campaign to psychiatrists, pediatricians, and family doctors. Simultaneously, successful drug company lobbying gave them unrestricted freedom to advertise directly to consumers. Parents and teachers were inundated with the message that ADD was terribly underdiagnosed and easily treated with a pill. Sales of ADD drugs ballooned to an astounding $7 billion.

He then moves on to bipolar disorder:

Childhood bipolar disorder is an even more chilling case. DSM-IV had wisely rejected a proposal that there be a separate and much looser definition of bipolar disorder in children. The argument for inclusion rested on the unreplicated findings of just 1 [albeit very influential] research group suggesting that kids present a developmentally different prodromal form of bipolar disorder characterized by ambient irritability, impulsivity, and temper outbursts, rather than the typical cyclical mood swings of adults. Rejection by DSM-IV did not stop charismatic thought leaders [who were heavily financed by drug companies] from spreading the gospel of childhood bipolar disorder. The 40-fold increase in rates was accompanied by an increase in antipsychotic spending up to $18.2 billion in 2011. These drugs frequently cause massive weight gain in children. The overuse of antipsychotics in kids was not deterred by the fact that childhood obesity is an important risk factor for diabetes and heart disease. Drug companies have received billion dollar fines for off-label marketing to kids, but these pale in comparison to the enormous revenues. Of note, the inappropriate use of antipsychotics is most pronounced among children who are economically disadvantaged.

He then accurately depicts the link between the rise in diagnoses of autism with the fact that a diagnosis is needed for a child to receive appropriate services:

The introduction of Asperger’s by DSM-IV was expected to result in a 3- to 4-fold increase rates of autism. Severe classic autism had an unmistakable presentation with rates lower than 1 per 2000. Asperger’s blends imperceptibly into normal eccentricity, and the rates of autism are now reported at 1 per 88 in the United States and 1 in 38 in Korea. Theories connecting the increase in prevalence to vaccination have been discredited. Instead, the rates have grown so rapidly because a diagnosis of autism is required to allow a child access to greatly enhanced school services. About half the youngsters who now receive the diagnosis do not really meet the DSM-IV criteria when these are carefully applied. And follow-up studies finding that half the kids no longer meet criteria also confirm that diagnostic inflation is rampant. Eligibility for school services should be decoupled from an unreliable clinical diagnosis and instead be based on educational need.

The challenge, and Frances does acknowledge this fact, is to avoid over-diagnosis while at the same time not undertreating those who need help. Most of the children who receive these labels, and their families, are struggling in significant ways. They do need help, and sometimes lots of it. The issue is inextricably linked with the need to "name" the problem, a need comes in part from both clinicians and parents, who may feel more of a sense of control if what they are struggling with has a name, and also insurance companies who require a diagnosis for reimbursement of services…

My reason for posting this article by Dr. Allen Frances [which is as clear and persuasive as Dr. Gold says] by proxy is that I thought Dr. Gold’s commentary was value added – a twofer. Working in clinics in rural Appalachia, I’ve seen two sides to the ADHD story. In a Child clinic, I saw any number of kids whose parents or teachers were pushing for treatment with stimulants when the real problems were in another domain, usually behavioral disorders. And I saw a number of kids with ADHD proper for whom treatment was important. But in the adult clinics, I’ve seen the other side of the coin – people whose lives were made unnecessarily complicated by growing up in an area and an era where nobody had ever heard of ADHD. I jokingly call the patients I’m talking about "telescopic ADHD" – meaning it can be diagnosed through a telescope it’s so obvious. And their life histories speak to the very real problems of living with the condition untreated. ADHD is a double-edged story of both over- and under-diagnosis, over- and under- treatment.

From my perspective, the DSM-IV did the best it could do with the whole issue of the Bipolar Child craziness. I lay the responsibility for that one not on the DSM-IV but on Drs. Biederman and Wozniak at Harvard, the pharmaceutical sponsors, but mostly on the the community of child psychiatrists who accepted and promulgated the idea with no solid evidence base. Like "Treatment Resistant Depression," the "Bipolar Child" was a creation of the psychopharmacology era itself – a rationalization for the inappropriate use of powerful and dangerous medication for behavior control.

As much as I always appreciate Dr. Frances’ perspective, it was Dr. Gold’s final paragraph that I really wanted to highlight. The thing I personally hate the most about modern psychiatry is that it so simplifies everything – diagnosis, treatment, people, relationships, histories, struggles, even the brain – everything. I have no idea who the Ed Tronick she mentions is, but I like him by proxy. I came to psychiatry in order to "embrace complexity," because I could see that there was nothing at all simple about any case I saw of mental illness. But psychiatry has tried to go dumb on me. Viva complexity!

Psychiatric labels, be it "ADHD" "bipolar disorder" or "autism," are artificial constructs that provide a false sense of simplicity. When I see a child and family in consultation, the aim of the work is to take the time to listen to the story and understand where, and it may be in several places, the "problem" actually lies. In order to help these children and families in a meaningful way, we need to be able to, in the words of one of my mentors Ed Tronick, "embrace complexity."

And you wonder why psychiatrists like me refuse to do C&A work under 16 years old.

It is nothing less than incredible and horrifying how many people are given ADD or Mood disorder diagnoses just because they are acting out. And these days, with our culture so detached and distant, what is a kid to do?

Oops, I forgot, DSM5 has added Acting Out Disorder, so with ADD and BPD and AD and OCD and PDD and of course ODD there is AOD and all I know is my profession is full of SOBs

Ed Tronick really is a legend in child psychology, and it’swell worth taking the time to check out his work if you have the time. He’s one of the few developmental psychologists that embraces the complexity involved in emotional development of early childhood, and tries to make sense of how early childhood experiences create a lasting sense of self. His work is based on sympathetic and detailed observation, and avoids many of the harmful simplifications that plague modern child psychiatry.

I know there really are some kids out there who really have ADHD but never get diagnosed. And I believe you could really see the impact on their life stories once you meet them as adults. But what do you think about the “adult ADHD” diagnosis? Is ADHD really a lifelong illness? Do these people have it — or do they just have the habits and history of a former ADHD kid who never got help?

One thing I’ve seen several times has been a parent who gets diagnosed ADHD after they bring their kid in for help. The doctor tells them it runs in families. They either get their own Adderall script or sample their kid’s pills — and wow, an epiphany! “I realized I wasn’t a bad person — or thoughtless, or dumb. I just needed medicine for my disease!” These cases kind of spook me, because that was almost exactly my reaction (and that of a lot of other alcoholics) to that first drink at 17: “Where has this stuff been all my life? Now I know why I never fit in … etc.” The resulting maintenance medication program did not go too well … and Adderall is potentially even more addicting. The majority of people who try it like it, and probably do a bit better on that midterm too. It makes me want to take these epiphanies about adult ADHD with a grain of salt … what do you think Dr. Mickey?

When I took a job as a nanny for a four year-old with A.D.H.D and a hearing impairment, he was about to get kicked out of kindergarten. He had been treated like a baby by his previous caregivers who didn’t speak English. His single working mother had a hard time keeping and affording caregivers for her son. She had A.D.H.D. too. Bad.

When I accepted the job, I was pretty sure I could have him walking, talking, feeding himself, and dressing himself in two weeks. And I did. I figured that it was best to start as if it were a matter of behavior, but stay open. Then we spent two weeks with a heavy focus of training him to look where I was pointing. He loved to blow the dandelion fuzzballs in the lot next door, so he had a lot of incentive to look for and find the dandelion I was pointing to. We made that a part of every day in games and tasks to reinforce it.

His mother would look in the refrigerator, move her head like Stevie Wonder (like the child did at first) and say, “Where is the mayonnaise?” The mayonnaise was on the top shelf, in the center, front row, with room all around it as if it were advertising it’s availability. I was suspecting then that I had ADHD too, but had no doubt that she had it as bad her son, and much worse than me, though there was only speculation at that time over whether or not adults could have it.

It took eight months for the me and the child to go together to the box store across the street without him becoming so overwhelmed that his meltdown did look like mental illness, powerful enough to strike terror in the hearts of all who could see and hear. How often is that kind of meltdown labeled as evidence of psychotic illness now? That street was the busiest street in Houston and the box store was enormous, crowded, everyone was moving around hurriedly and often pushy the way people in big cities tend to move.

We worked a little bit every day to get to that store, get what we came for, pay for it, and head back home We did it without me pushing or shaming or guilt-tripping him or dwelling on it beyond the exercise; while I was genuinely patient, not just trying to look like I was. Every effort was a good effort. Every day we tried. He wanted very badly to be able to do what other children could do, so he tried every day and every day he got a little bit farther.

In time, he did it and it was as if a fever had lifted, though I suppose it was more like a neurological structure, coping processes. and more refined perceptions had been reinforced in his brain.

After the first month, his mother thought we were doing so well that she stopped giving him his medication. Bad idea. It was me or medication free. Before I moved on, he was being advanced a level in school, and was getting along well with other children. Watching him jog enthusiastically to the morning school bus, instead of trembling and fretting with leaden feet, head hanging down, full of dread, and fearing he might be kicked out of school that day; was the sweetest thing.

Why are our children being cast into an affective wilderness with powerful anti-psychotics and other neuroleptics before any joint effort has been made to get to know the child in a meaningful way, to teach them, to coach them, to listen to what they say and take them seriously as people who have a lot to learn?

Johanna, I agree with my diagnosis of ADHD. The psychiatrist who diagnosed me spent an extra half hour (for no extra charge) testing men, but did not label me. He gave me a web address for an ADHD website for adults, recommended that I look into it, and asked me to see if it seemed to describe me. I felt like I had found my planet. There was a woman on the website talking about how she has never managed to shave her legs without cutting them! Neither had I! That was not hyperbole, it was truth. NEVER.

I’ve studied my symptoms intensively since then and have concluded that my “ADHD” is the result of a head injury I had as a child. I have frequent absence seizures in which my executive functions stop. To another person it may look like me inexplicably dropping a glass while standing still. To me it looks like the lights going out, my hands ticking, and my body moving without executive control.

Not only was it a relief to find my people, at that time, but it was vindicating. I am still learning to stop judging myself the way I have been judged since I was child. I don’t, for instance, not drive a car because I am lazy, not trying hard enough, immature, lacking direction, lacking purpose, or have some kind of phobia or fear of success; I don’t drive a car because one or two seconds with my frontal cortex being out to lunch could kill someone. I don’t drive because I’m responsible. I’ve learned to laugh about a lot of the problems caused by the seizures, but still
I struggle with puritanical blame and folk psychology.

Ritalin worked great for me as long as I took it with Wellbutrin. Neuroleptics didn’t help at all. Guanfacine helps me now with sleep and focus/ I could have never handled the linear demands that I handled on the most challenging job I ever had without something that works as well as Wellbutrin/Ritalin.

I’m positive my “ADHD” is the result of a head injury when I was eight. When I was four years old, I would get up by myself, put on my bathing suit, then jump into the pool at the apartment where we lived. The thought of drowning never occurred to me. I couldn’t get into the water for the rest of the summer after the head injury. The next summer when I jumped in the water, I swam a little and then sunk like a stone. I could breaststroke, or butterfly as well as my mother— a very strong swimmer— then I’d start inexplicably drowning. My parents were convinced it was psychological, so they threw me in the water from a boat in the middle of a lake, and were shocked to find that I didn’t swim. My mother had to come get me.

I believe that in time, it will be understood that ADHD is any insult of injury that interferes with the development of executive function when a child is at that stage. It could be blunt force, toxins, psychological shocks, or illness that precludes normal neurological development.

Wiley, sounds like you understand your own history even if the doctors don’t always. Sorry you have had to contend with “medical” types blaming you for the real problems. Head injuries can leave a complex trail of trouble even if the person was never knocked totally unconscious. Doctors used to laugh at ignorant laymen who blamed all sorts of physical and emotional problems on a person being “dropped on his head when he was a baby” but they were probably right. Thanks for reminding us that a poorly-defined “grab-bag” diagnosis like ADHD can leave all sorts of things undetected in the grab-bag, from family conflicts to brain tumors! Ladling out the same meds for everyone in the grab-bag without stopping to listen probably results in neglect or harm to two out of three. (I heard a doctor talk recently about another “grab-bag” called fibromyalgia. Some of those patients, he was convinced, have very real muscle pain, fatigue and “brain fog” … but it’s probably caused by their statin pills.) Hang in there, and keep writing! Just checked out your blog, it’s great.

Hmm. I have MS and had symptoms for three years before couldn’t walk. Knew not to see a psychiatrist about the fatigue and brain fog, but the symptoms were befuddling. A lot of people are sent to psychiatrists before something undeniably neurological gets them into an MRI.

“Fibromyalgia” may be just be “flu like symptoms” in the neurological body. The statins may call some of those problems, which would be easy to demonstrate I’m thinking—- stop taking the statins.

For people with ADHD, i think it’s important to not spend the lion’s share of our time and energy trying to compensate in order to do what we or someone else thinks we should do, when it would be best for us to do things we’re good at.

Had I not had problems with the Wellbutrin and sleep, though, I would certainly be taking ritilin now. I’m taking amitriptyline for nerve pain and sleep now, and trazodone for sleep. Though I am working on meditation to help me put the pain in its place. It’s not like the muscles in my feet are really being torn from the bone, so I’m tempering the sense of emergency and panic.

Wiley doesn’t need new glasses. Dr. Mickey needs a new typeface … this stuff is too damn good to appear in eight-point type (I will confess to cutting & pasting it into a Word document and then blowing it up to read it.)